Stephanie Wedgeworth Hartman

@stephanie-hartman | contributor
I am Mom to 16-year-old Abby and 7-year-old Avery. Avery’s premature birth at 25 weeks and consequent cerebral palsy and polymicrogyria diagnoses were my catalysts into the world of special needs. I am an avid reader, writer and a two time preeclampsia survivor. If I’m not at my computer, I’m likely off creating something!

How I've Changed in 5 Years of Parenting My Son With Cerebral Palsy

Five years ago, I wrote my first blog post that would go on to be published on The Mighty. Our son was 2 years old and had just received the diagnoses that would define our next few years. That would define our entire lives, as it would turn out. At the time, unbeknownst to me, I was struggling through a particularly nasty case of NICU post-traumatic stress disorder. I found it extremely difficult to navigate life with his new diagnoses when I still hadn’t come to terms with the trauma that the previous two years had handed me. I was struggling, my head barely above water. So, I began to write. My thoughts and feelings poured out of me through the sieve of a broken heart. Those five years saw more tears than I care to recall, but it was the culmination of those tears that produced the mother I am to Avery today. Avery left the NICU after four months with a clean bill of health, we were simply cautioned to watch for the weakness, rigidity, floppiness, and limb favoritism that could be early signs of cerebral palsy. When we began to see that tell-tale weakness and rigidity materializing at around 12 months old, our worries began to turn into real, tangible fear. Within months he was diagnosed not only with cerebral palsy but with a rare brain malformation called polymicrogyria. The day we got the call, all I heard his neurologist say was “nonverbal, typically ‘confined to a wheelchair,’ epilepsy that is difficult to control.” There was no way to see past the bad in order to understand that there could be good. It was all doom and gloom. Worst case scenario. Our son, who we had been so hopeful for while watching his physical therapy sessions, was never going to walk. That fear held me captive. How would he go to school? Would he have interests, friends, or even be accepted by his peers? Was I capable of being all that he needed me to be? The one common denominator for most patients living with polymicrogyria is seizures. Not if, but when. The thought of his first one haunted me. When, where, how long? Would I be there? And would he ever actually walk? Five years ago, I was still very much in that “woe is me” mindset. I saw his CP and PMG as maleficent forces that I was too small — too insignificant — to fight. What I didn’t consider in those moments was that Avery was by the definition of the word, a survivor. He took his first heroic steps just days before his third birthday. He has an awkward gait and he falls an awful lot, but he walks. In fact, most of the time he’s running! If he didn’t, of course we would love him the same. He would be the same stubborn child he is. I wasted so much time worrying about something that matters so little in the grand scheme of things. The ability to walk (or talk or do anything) doesn’t define a person. I should have focused more on the things he could do. My overexaggerated fear was a disservice to his autonomy! He had his first seizure at school when he was 4. My worst fear came true. They communicated with me stunningly, though, and I was there within 10 minutes comforting him as he eased back into real consciousness. By that same evening, he was back to his status quo, playing with his toys in his room and asking for pizza. He’s had a couple more seizures, none as severe as the first one. For that, we are thankful because we know that one day soon this will probably change. Instead of focusing on the fear of the future, I now choose to appreciate the stretches where he hasn’t had seizure activity and pray that the lull continues. I didn’t change myself. There was no epiphany where I realized that I was doing my son a disservice with all my worrying and stagnation. Avery changed me. I watched my son conquer everything we were warned he may not with a strength and resilience the likes of which I had never seen before and I’m unlikely to see again. He rarely complains, though I know he lives in pain. He sees how he’s different from the other children, but he does not let it hold him back. He makes friends with ease. One day he plans to live in Australia with his best friend and their pet kangaroos. He’ll have to commute back and forth to the United States for his job as an astronaut, of course. Witnessing him grow into himself changed me. Seeing Avery as an individual who is capable of whatever it is he wants to accomplish in life has loosened the clutch my fear had over me. I still worry, but I don’t let it control me. Life is easier. I’ve accepted the fact that if my son wants to do something, he will figure out a way. We have tried to instill in him that he is capable of anything he sets his mind to do and I will go down fighting to ensure he has every opportunity anyone else does. We will not let CP hold him back from anything. Avery is so much more than cerebral palsy or polymicrogyria. I’ve said this all along but wonder now if I truly believed it back then. Back five years ago when fear consumed me. He’s so much more than any diagnosis he will ever receive. He’s a little boy who has survived more than many adults ever will. He’s ash blonde hair and striking blue eyes. He’s reading at a full grade level above his own. Master of video games though he can only use one hand. He’s quick-witted and the best teller of knock-knock jokes. Entirely too much attitude and sass for someone weighing only 45 pounds. Super Mario expert extraordinaire. He’s our son and he’s perfect. I cannot wait to see how much more he can change me in the next five years, and I look forward to continuing to learn from the absolute strongest person I know. Thank you, Avery.

The Truth Behind 'I’m Fine' as the Parent of a Child With a Disability

“How are you?” It’s an innocuous question, right? We all hear it daily. We even ask it daily. As often as we hear it, though, as a society, we seldom deviate from the standard “I’m fine” reply. Are we really all fine, and how would we be perceived if we gave a more honest, transparent response? Today, I’m going to tell you what “I’m fine” really means for me. This is what being fine means through the lens of parenting a child with a disability. Sometimes, it means I’m tired. My life is a revolving door of doctors, therapy, speech and specialist appointments. I can’t tell you how many hours a week I spend driving him to his appointments. It’s a lot. COVID has alleviated some of this, but it also replaced it with pouring more onto my already full plate. When my son couldn’t go to therapy — and some kids still can’t — who do you think became the physical, occupational and speech therapist? I did! Many children with disabilities don’t sleep through the night. My son is not able to dress, wash or feed himself. And then I have to do all of that for myself. So, I live in a constant state of exhaustion. You don’t have to tell me that I look tired. That’s just my face now. I might not tell you, “My son couldn’t fall asleep until 3 a.m. and I’m dragging today.” So I just say, “I’m fine.” Often, it means I’m scared to tell you how it’s really going. I don’t want to tell you how I’m watching my son struggle to write his name or use utensils. That recently I have admittedly allowed him to eat with his hands because sometimes, it’s just easier. Easier for me. I don’t want to say that my son cries every single day because his brace hurts, or that I force him to wear it even though it does. I don’t want to talk about the tears I cry because I can’t handle seeing his. I hate the thought of verbalizing how it feels to have my child ask me why he isn’t the same as the other kids. Because that stuff? That’s how it’s really going. I say “I’m fine” instead of saying that I feel like a failure most of the time. Like my son deserves someone more patient who possesses better skills required to care for him. I question, second, and third guess every single decision I make for him. The pain he experiences from treating his cerebral palsy is the stuff of my nightmares. Should we have had that surgery or could we have tried an alternative treatment? Is his quality of life afterward worth the pain it inflicted? There’s no way to know, and ultimately there’s no correct answer. The stress involved in all of these decisions is tangible. It’s become an entity in our home. This stress is what makes me most feel like I’m not good enough. Sometimes, “I’m fine” means that I don’t want to talk about how we’re doing. It could mean I’m in denial or I don’t want to think about any of this. Sometimes it’s easier not to bring attention to what is going on and to escape. So instead of sharing, I compartmentalize, box all the feelings away and enjoy the short-lived oblivion. There are times when “I’m fine” means just that. I’m fine. We’re good. My son slept last night and ate real food today. He wrote his name legibly and made an A on his spelling test. He wore his brace all day without complaint. He hasn’t busted his head open in a week or two or taken any other nasty falls. He’s letting me stretch him in the morning so he’s getting around a little better. None of the other kids have asked him about his “robot legs” lately and he must feel like he’s blending in better because he hasn’t cried about being different in a few weeks. We even had a one-month stretch without two-hour one-way drives for specialist appointments. He’s been healthy for a few weeks. I feel strong and confident in my ability to make decisions that will help him. I’ve been resting, exercising and taking time for myself. Last night, before bed, he told me that I was the best mommy ever. So today, if I tell you I’m fine, I really am.

My Child With a Disability Is Going to Kindergarten

From the moment of my son’s very early and very unexpected birth, “Avery will do what he will do,” was the mantra my husband, Arick, and I lived by. We didn’t know if Avery would be able to grow up and do things. As he’s grown, it has become increasingly clear that not only will he do what he will do, but he will do it in his own time and in a way completely unique to him. Avery was born at 25 weeks weighing 1-pound, 3-ounces and struggled to stay with us for his entire first month. From a patent ductus arteriosus defect in his heart that led to surgery at around 2 weeks old, to an inability to process feedings, to not gaining weight, it was the hardest month of our lives. He very slowly started to improve and at 32 weeks gestation when he was a little over 2-pounds, he was given his first bottle. I remember them telling us that this could be a turning point. Either he took the bottle and did well or he wouldn’t and feeding would continue to be a challenge. He needed a little support but our tiny son took that bottle like he’d been doing it all along! And they were right. It was a turning point. He started to gain weight consistently for the first time. In another eight weeks after a total of 111 days in the NICU, he came home. For every scare he gave us, he did something amazing that renewed our hope and allowed us a moment of reprieve. When he turned a year old, he couldn’t sit up. He didn’t babble or play with toys. He was about 11-pounds and essentially a newborn. He was also starting to show signs of cerebral palsy, which we knew from the NICU to watch out for. He kept his left hand clenched and his entire left side was tight. I got him evaluated and he started physical therapy (PT). A month later he was formally diagnosed with cerebral palsy. Four months after that, with polymicrogyria. Those were some dark months, too. In our minds and hearts, it was back to square one. We’d watched our son fight for his very survival and now we had to accept that he’d be fighting for everything. Forever. But still we told each other, he’d do what he’d do. And we’d love him through it. With lots of PT, Avery took his very first, very unsteady steps just before his 3rd birthday. He did it! He walked! The first thing I thought he’d never do, he did. In Avery time. Although he couldn’t speak in phrases, he had a few words. We started twice a week speech and within six months he could say “more milk please” or “go play now.” At his three and a half year visit with his neurologist, the doctor looked at me completely awestruck and said. “Knowing what his brain looks like, I can’t believe he is talking like this.” Victory number two! On his third birthday, Avery started attending the preschool program for children with disabilities (PPCD) — it was a scary thing. An all day program through the local school district. I was overwhelmed thinking about him being away from me for eight hours a day. He cried every day I dropped him off until I finally decided I needed to give it one more week and if it didn’t improve, I’d withdraw him. It was no longer beneficial for either of us. That week he stopped crying and I realized he knew the colors red, blue and yellow. We were driving one day and he saw a stop sign. “S-T-O-P” he said. So I kept on bringing him because I saw the benefit. We were warned at birth that Avery would most likely have severe developmental and intellectual deficits. And here he was at not even 4 knowing his colors and letters. Kids age out of PPCD around kindergarten age and either go into general education or life skills classes. My goal for Avery from day one was to give him as typical a life as any other kid, and I’d have accepted either for him. He was impressing his teachers and school therapists (and everyone who met him). At the middle of this past school year I pulled his teacher aside and asked her if she thought he would be ready for kindergarten. Her answer? A resounding yes! He was potty trained, able to move around the school freely — at his own pace — and had become increasingly self-sufficient. I went to my car and cried for a good 10 minutes. I cried tears of joy and tears of relief. And if I’m being honest, a few tears of fear. By early May it was confirmed. Academically Avery was doing better than most kids already in kindergarten. He was obviously ready. Avery will be going to general education kindergarten in August! With his peers! So many tears I cried over these last five years that wouldn’t have changed anything. Would I love him if he didn’t walk or talk? Absolutely. Nothing he’s ever done or not done could change that. But seeing the things he has done — those are the things that have changed not only him, but Arick and I. That have made us more understanding. That have made us look at other parents and not for one second judge them or their situation. We’re all just doing the best we can. Sometimes we fall short but sometimes we excel in ways we never thought possible. Avery is this idea personified to his dad and me. I want his kindergarten teacher to know what this journey has been like. Chances are when I meet her, I’ll pull her aside and give her the abbreviated, cliff notes version of Avery. I’ll tell her to watch out for him because he isn’t the best walker. To listen closely because sometimes he gets excited and his sentences become one long, convoluted word. I’ll tell her to make sure that he’s included in things and allowed to do things in a way he can. Because things are hard for him. But if you give him a little bit of time, a little bit of support and a whole lot of love, he’ll do it. He’ll do it the Avery way.

Supporting Siblings of a Child With Cerebral Palsy

Dear Big Sister to a Little Sister with cerebral palsy, A few weeks ago, when you had no idea I was watching, I witnessed a remarkable act of love and compassion. I saw how you lovingly embraced and soothed your little sister after she stumbled and had a hard fall. I witnessed you stroke her soft hair and wipe her tear-stained face. I listened as you whispered soft words of comfort and encouragement in her ear. I watched as you swiftly made your way to the freezer to fetch one of the ice packs we always have on hand. Moments like these have become commonplace in our world of living with cerebral palsy. Although you are not the one living with cerebral palsy, you are familiar with this world and what this diagnosis means. You have tagged along on countless doctor appointments and therapy sessions. You have been a part of care plan meetings and brace fittings. You have witnessed your sister scream in pain from lab draws and injections for muscle spasticity. You have witnessed tears silently stream down your mommy’s face too many times. I imagine you’ve been filled with worry and concern too. I have heard you explain to your friends in the most perfect way why your sister’s left side “doesn’t work as well” or why she has to wear a brace on her leg. You seem to go through all of this heavy stuff while wearing a brave and happy face. I imagine this life is hard for you too. I’ve seen you sad and wishing your sister would be able to just walk up the stairs or put on her own brace and shoes all by herself. Or run around at the park carefree like other kids. I know there are times when you feel like your sister is getting all of Mommy and Daddy’s attention, and life seems to revolve around her. This is the only life you know, and you own it. You my child are amazing. And brave too. You have a “one-up” on life and you don’t even realize it yet. Growing up with a sister who has cerebral palsy can be challenging, however it is helping to perfectly shape you into the incredible person you are meant to be. This life has shown you the beauty of unconditional love. You love your sister so fiercely and are her biggest cheerleader and protector. You accept her and celebrate even the tiniest of milestones and victories. This life has also given you unwavering compassion and empathy toward your sister and every other human being. It is already so natural for you to be there for others who need a word of encouragement, a quiet smile, a helping hand or a friendly presence. These qualities are beyond your years. You are living a life that takes an understanding heart and a strong mind. You are destined for great things in this messy but beautiful life, and I am thankful I get a front row seat to watch your life unfold. You my dear are a beautiful soul. I believe God sure knew Mommy and Daddy needed you, and knew your little sister needed you too. Love you so much,Momma

It's Hard to Let School Staff Care for My Child With a Disability

As I walked out of Avery’s school this morning, I paused just before I stepped out onto the sidewalk. I squinted my eyes and looked back through the double doors, past the office, and I could just make out the back of Avery’s little blond head bobbing on the last seat of the cafeteria table. Tiny little Avery, aide’s arm wrapped tightly around him lest he fall from the chair he’s much too small to be sitting on. In the seven weeks since he began going to school, I’ve become a master lingerer. I’ll stand just outside the door of his classroom or just down the hall. Or perhaps behind the bookshelf between the door and the carpet he’s supposed to be sitting on. Once, I spent two hours in the parking lot, anxiety in overdrive after I saw an ambulance pull up just as I dropped him off, phone in hand, struggling to control the urge to ask. Is Avery OK? Is he crying? Bleeding? Coughing? Is his nose running? Are his shoes too tight and do you know how to tell if they are bothering him? Is he warm? I’ve had weak moments when I ask, but for the most part I resist, because we all know what I’m really asking: Are you capable of taking care of him? For the first two and a half months of his life — and if I’m being really honest, the full four months of his hospitalization — Avery wasn’t really mine. I couldn’t hold him, feed him or rock him to sleep. I made no decisions for him save for those regarding surgeries and medical procedures that needed parental permission. He lived in a box, in a hospital, behind locked doors. And for that, I’m grateful. His life was saved by some of the most capable, loving hands and minds that you will ever come across. But he wasn’t ours. After two and a half months, we began holding him in order to feed him and were able to change his diaper and do other small parts of his care. We’d visit several times a day to take part in this, making sure we fed him as much as we could. Then we would hold hands, say a prayer, kiss him goodbye and walk out those locked doors. Without him. On his 111th day of life, he became ours. We signed a mountain of papers, learned to operate medical equipment and took him out those locked doors with us. I cried more tears that day than any other day during his stay. Why? Complete and utter fear. Nurses and doctors had been caring for him his entire life and now they were just handing him over to Arick and me, trusting that we could do everything they’d been trained to do. But what if I didn’t give him one of his nine medications on time? What if he had an apnea episode? What if he stops breathing? My fear was justified but eased by every nurse who came to me that night and told me that I’d been doing it alongside them for weeks. They wouldn’t send him home with us if they didn’t know we’d be able to do it. I know now what that fear symbolized. I was asking myself: am I capable? I’ve doubted myself nearly every day of his life. When he’s got a fever, I instinctively want to run to the ER. A strange cough from him can send me into a panic because he simply isn’t a typical child. He gets sick easier and stays sick longer. RSV or bronchitis are automatic hospitalizations. But, I’ve learned on the fly. I know his cues, and I’ve never been wrong when I feel like he needs to be seen. Across three years I’ve taken those nurses places and become his caretaker. I became his mom. Well, I became that mom. He can’t eat that; stay away if you’re sniffling; no, he can’t have a sucker; I’m not trying to hurt your feelings but can you please not do that; you better be patient he just learned to walk; please teach your children that we’re all the same inside and all the world needs is more love. Which brings me to my point. School. And the release of some major control. Avery goes to a regular elementary school with kids from pre-k to fifth grade. Well, except for his class. The best class: PPCD. The preschool program for children with disabilities is a special place, to say the least. Avery is one of seven kids ages 3 (although he’s the only 3-year-old) to 6 with disabilities ranging from Down syndrome, intellectual impairments and speech difficulties to him: the little one with cerebral palsy and a brain malformation. They have structure and are taught their ABC’s, 123’s and all of the other things they’d learn in a typical preschool. There’s PE, breakfast, lunch and our kiddos get physical therapy, occupational therapy and speech therapy as needed — all in the classroom setting. From the moment I walked into the classroom I knew it was special and that Avery would thrive in that environment. But letting him, that was a different issue. And he hasn’t made it easy. In the beginning, when we’d drop him off he’d fall to the floor in tears. Or he’d look back at us while they drug him down the hall, fat bottom lip sticking out and Texas-sized tears falling from his eyes. That was when I’d linger. I’d hide and wait to see if it stopped. And it did. It always stopped. Sometimes within seconds and others in minutes. By the time the morning song started he would be singing and dancing with his little (big) classmates. Mommy left him but he is OK with it as long as he is having fun. And when he isn’t? He throws a fit, takes off his clothes, fights with J (who I’m told he can actually hold his own against!) or throws things. He’s 3. It happens. Aside from one hospitalization, Avery has never been away from us for longer than a night. He’s never been to a babysitter, to daycare or to stay with anyone who isn’t related to him. Now, I drop my son off each day with three strangers to take care of him all day. To feed him, clean him, change him and teach him. To keep him safe, warm and happy. (I paused here while writing this to go to the grocery store. Standing in the produce section, my phone began to ring. I looked down. Avery’s school. Normally, if there are issues, his teacher calls me herself. Confused, I answered. It was the school nurse, letting me know that Avery had fallen and hit his head and wasn’t acting right. They insisted I take him to the hospital. He smiled when he saw me and perked right up in the car so I think I’ll say he’s OK. I mean, he falls quite a bit. He’s got cerebral palsy and he has only been walking for two months. All of this to say, told ya. I worry. I worry a lot. See why?) But back to keeping him safe, warm and happy. Can they? Do they? Yes. Last week, a cold front came through during school hours. Avery came home wearing a hat. Today, they called me immediately when they felt he was acting unusually. His hand is held and his nose is wiped when needed. His teacher has often told me: “Wipe your tears, Momma. He’s gonna be fine. It’s you I’m worried about.” So, I wasn’t ready to let him go. I didn’t think I could do it. But I want him to go into a mainstream kindergarten class alongside your children. I want him to have every opportunity to thrive and succeed. So I made the decision that was best for Avery, not for myself. I let go and let him go. This morning, I made it all the way to the sidewalk before I looked back. That’s real progress from the me who stayed in the classroom until they asked me to go. Will I ever stop looking back? Probably not. But one day, when I look back and I can’t see him . . . when his little blonde head isn’t visible anymore because he’s off somewhere having fun and changing the world, I’ve made a promise to myself that I won’t freak out. I’ll take a deep breath, turn around and go home. And I won’t even text.

Community Voices

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When My Son Had His First Seizure

I haven’t been sleeping well. I’ve always been a light sleeper, waking up each time my sister moved around in her bed next to mine or when I heard someone’s heavy footsteps on the wooden floor of the stilted house I grew up in. Four years ago, it got worse. When you bring home a baby who can’t cry, your instincts are piqued to do what is necessary. The smallest rustling of his blankets had me sitting straight up in bed, squinty and blind, shaking Arick and saying “look at Avery!” Sometimes, he pulled his oxygen tubing down and tried to suck on it. The almost silent swishing sound the air made even woke me up. So, I’ve been sleeping badly for a while now. The past few days though… it’s become not sleeping at all. We’ve had plenty of reason for sleepless nights with Avery. In the beginning it was,”Will he make it through this night?” When will he gain weight? Will he have a brain bleed? Then surgery. When he’d stop digesting and go back on TPN. Infections. Fevers. Aspiration. Choking. Pneumonia. Pain. RSV. Then CP. PMG. Will he ever sit up? Crawl? Talk? Walk? Will he, like the majority of the population with PMG, have seizures? Wednesday morning that question was answered for us, and not in the way we wanted it to be. “Avery had a seizure.” God, no. Please, no. Don’t let it be true. Let this be a dream. Wake up, Steph. But it wasn’t a dream, and it has cast a dark shadow on every moment since then. An hour ago I heard a loud sound from his room so I yelled his name. He didn’t answer so I panicked and ran that way. There he sat, in the middle of the room, grinning at me. “Gosh, Avery! You have to answer me.” “Okay my Mommy!” Ten minutes ago, another loud thump. In my mind I see him on the floor, seizing. This time I don’t call him, I just run. Relief floods over me when I see him sitting there, softball in hand. I’ve had a hundred mini heart attacks a day since Wednesday. I told myself it’d get better as the days pass but it’s actually been the opposite. The more time passes without another seizure is the less time there is until the next one. That’s a pretty messed up way to see it, huh? I’ve been waking up every 30 minutes or so at night, breathing fast and overcome with worry. I look over to see if he’s OK. Most of the time I can’t see and I wake Arick up to look at him with me. He assures me that he’s fine, but if my anxiety is so bad I have to get up. I’ll walk over and look down at him to see the gentle rise and fall of his rhythmic breaths. That’s usually not enough, though. I reach down and put my palm between his narrow shoulder blades and I feel it. I feel the breaths. Only then do my own breaths calm. I’m so scared. What happens when he has one in front of me? Is it a blessing that his first was at school so I didn’t witness it, or do I wish I’d have been there to hold him? (Yes.) When we are alone, will I panic or handle it? What happens if he vomits? If he has one in his sleep and I’m not there? How do we process all of this on top of what we already struggle with? Then it hits me: it’s never been easy! We brought home a baby that used to weigh a pound. Gave him nine medications around the clock and cared for his oxygen needs. Watched his monitor. Handed him to surgeons and healed his scars. Spent thousands of hours in therapy learning to crawl, then walk. Cried with each diagnosis. We’ve done hard. We know it well. So, he had his first seizure. Now we have the answer to that last question, the hardest question. It isn’t the end of the world. Just another thing. Yeah, it’s scary as hell. But who’s more qualified to deal with it than me and Arick? We’re rock stars at this point. So bring it on. We’ve got this, too. Ultimately, us accepting it and managing to keep going will allow him to do the same. The last thing I want is for him to live in fear of the next one and let it dictate his life. There’s too much life to be lived! If he sees us scared, he will be, too. We have to be strong so he can be strong. Although I don’t see that being a problem. He’s the strongest little boy in the tiniest little body I’ve ever seen. And he always has been.

Ellen Stumbo

Mom of Child With Disabilities Receives Note to 'Keep Son Away'

Update: The Mighty spoke to a source familiar with the matter who said the letter was removed after criticism online and not, as some commenters have suggested, because the letter is a hoax. As of right now, there appears to be no evidence that the letter is fake. Many parents of kids with disabilities worry about their children making friends. But when the obstacle to kids becoming friends is because of other parents, it can feel especially isolating. On Thursday, Lacey Brandenburg shared an upsetting note her son Ashton received from a friend’s mom. The note attempted to explain why the mom was no longer comfortable with Ashton, who is on the autism spectrum and has other disabilities, being friends with her son. Brandenburg shared photos of the letter on Facebook, adding, “this is being posted to teach people what parents wi th special needs children face and what they deal with.” The boy was Ashton’s only friend at school. Editor’s note: Brandenburg has since removed her post. The photos below were saved by The Mighty before the post was taken down. Photo via Facebook. The letter, which was sent after Ashton went to his friend’s house for a playdate over the holiday break, begins, “I am sorry, but after speaking with my husband we don’t think that your son playing with ours is such a great idea.” The mom who wrote the note explained her rationale, adding: The hand flapping is a concern, we don’t want our son to learn to do that!I know he has a disability but we feel his disability may hold our son’s level of comprehension life, his communication, socialization, and learning level may be at risk if playing and being around Ashton continues. While the letter included a line praising Ashton for being polite, saying “please” and “thank you” and picking up after himself, the letter focused on what the friend’s mother perceived to be “deficits.” “Keep your son away from ours so ours are not picking up the idea that playing with toys or watching cartoons younger than his age is OK,” the letter closed. Studies show that children — with and without disabilities — learn best in an inclusive setting. This can be translated into inclusive societies, classrooms and friendships. “When you see the disability before the child, it is not only wrong for the child, but it deprives society of all that child has to offer,” Anthony Lake, UNICEF’s former executive director, previously stated. “Their loss is society’s loss; their gain is society’s gain.” Discriminating against people with disabilities is a pervasive problem connected to negative disability attitudes and stereotypes. Adults with disabilities have a higher unemployment rate and are more likely to fall under the poverty threshold. Before Brandenburg removed her Facebook post, more than 48,000 people shared the post. Thousands of commenters expressed outrage over the letter, with some adding messages of support for Ashton and his family and others pointing out the letter’s grammatical errors and redundancies. One commentator and fellow parent, Stacy Lubbert, said, “We have a responsibility as adults to teach our children acceptance and compassion. And excuse me but I still watch Bugs Bunny when given the chance! I didn’t know there was an age limit on cartoons!” Another parent, Colleen Novit, posted on Facebook, “Please don’t ever be THAT parent. Hate breeds hate friends, don’t break their innocence, let them love!”

Ellen Stumbo

Truths Preemie Parents Want You to Know on World Prematurity Day

November is National Prematurity Awareness Month, and November 17th is World Prematurity Day.First, here are some statistics to keep in mind: In the United States, about one in every 10 babies is born prematurely. The average pregnancy is 40 weeks long. A baby is considered premature when it is born before 37 weeks of pregnancy. The earlier a baby is born (especially those born before 32 weeks), the higher the risk of death or disability. In 2015, preterm birth and low-birth weight accounted for about 17 percent of infant deaths. Babies who survive can have breathing issues, feeding difficulties, intestinal (digestive) problems, vision problems, hearing issues or bleeding in their brains. Long-term effects may include developmental delays or learning disabilities. While some people may believe once a preemie baby comes home they are doing “fine,” a preemie baby is always a preemie baby, and the baby’s parents are often hyper-vigilant of their child’s health and development. After all, most parents watched their children fight for their lives, sometimes taking one step forward and 10 steps backwards. Parents often grieve their shortened pregnancy and the implications it has on their babies. Others handle the weight of going home without their babies. And of course, we take this day to also remember the little ones who never made it home.All this can be impossible to understand from the outside. To help spread awareness and compassion, we reached out to our Mighty parents and asked, “What is one thing you wish people knew or understood about having a preemie?” These were their answers: 1. “[It is so lonely] despite the fact you are constantly surrounded by people. My little lady was in NICU for seven weeks, the longest and loneliest time of my life.” — Faith G. 2. “I wish people would understand that you cannot continue your life like it was before [the baby was born] because premature babies need much more care. You cannot go shopping with 2-week-old [babies] like others do because the baby does not sustain body temperature very well and is vulnerable to infections.” — Pillie M. 3. “Just because he ‘looks healthy’ doesn’t mean he actually is!” — Melissa S. 4. “It’s the scariest and loneliest experience you will ever have. You feel so helpless. I’ve had three preemies, one at 26 weeks (she was in hospital for five months) and two at 31 weeks (different years). Life just can’t carry on as ‘normal.’” — Suzzane W. 5. “You go through a roller coaster of emotions. My daughter was 14 weeks early and spent 13 weeks in the NICU. You aren’t able to have the happy memories of having your baby at that moment because you’re overwhelmed with fear.” — Stella A. 6. “I had four preemies and spent 15 months in total [at the NICU]. I learned that they are fighters beyond all. That family and friends do not ‘get’ what you go through as a parent and that you mourn the weeks you didn’t get to carry them. The trauma you experience having a preemie is beyond what you can imagine and often stays with you in forms of anxiety and PTSD. The fears you experience and see in other NICU parents chill your soul. Praying your child lives when other children do not. Experiencing guilt when other babies die and watching the suffering around you hoping with every hope possible it doesn’t happen to your child. Coming home with your baby and the silence of the bells and alarms is almost deafening and as terrifying as staying in the NICU. Wanting to scream at the nurses and doctors for appearing so cold and detached and knowing why they have to be. It’s a world like no other of which you never fully recover from.” — Elizabeth E. 7. “Stop asking, ‘When are they coming home?’ We don’t know.” — Erin R. 8. “The little things [that] may not seem like a lot mean the world to the parents. I can remember people bringing in treats and food for the refrigerator in the NICU, it was a glimmer of something sweet in a life of stress. Also, people knit baby hats for the babies and they are so sweet and since they can’t wear clothes it’s the only cute accessory [they] have. They would let us keep [the hats as] a reminder of how far he has come. The kindness of strangers was amazing.”  — Natalie M 9. “PTSD really does happen to parents of NICU babies. Our son was born six weeks early with spina bifida. He came home on a heart monitor and had to stay off his back for two months due to his back closure surgery he had the day after he was born. He is now 9 months old and doing well. However, every time I hear something that remotely sounds like an alarm of a monitor, I jump out of my chair. I was in a meeting the other day and someone’s phone beeped and I spun out of my chair to ‘check on my son.’ You can imagine the look on everyone’s face. I also wake up in the middle of the night and reach for my phone to call the NICU to check on my son… his crib is next to my bed. When I see a baby who was born on time without complications, I feel my anxiety start to kick in. Before I had my son, I would have thought someone who thought/felt this way would have been over-reacting. PTSD is real and definitely affects those who have had a child in the NICU.” — Rachel H. Are you a preemie parent? What do you wish people knew or understood? Let us know in the comments. Thinkstock image by herjua